First and Last

Posted on 13 May 2013 by jendavid91

There are evenings like tonight that I am sure I will remember in thirty years. There’s nothing remarkable about tonight, just a quiet evening at home, only it entails being forced to watch the school’s football field undergo a Cinderella transformation into my way-too-soon college graduation. And as such, I am overcome with a simultaneous sense of relief and panic – causing me to nearly freak out at the sight of the stage being built with a near “WAIT I AM NOT READY TO LEAVE”. But alas, no one would hear me, so I will spare my neighbors the screaming.

Graduating college is funny – you spend so long thinking about what school to choose, and then what classes to choose, what dorms to live in, and which textbooks to buy or rent. I remember matriculation four years ago, sitting in the crowd of my new classmates, a pit in my stomach trying to quell my intestines from causing a scene. To think about how sick I have been these past few years – the sheer number of doctors’ appointments, pills swallowed, IV attempts, hospitalizations, scars now icing my abdomen, and an ostomy bag carefully tucked into my dress, it seems unbelievable. But I want to be clear and direct – college was an amazing experience, and while I perhaps had far from the typical four-year journey, I have so loved my time at school and done some wonderful things.

When I was graduating high school, people who didn’t know me well cautioned me with wrinkled noses that I should stay home, I was – after all – sick, and why would I want to go to school in another country? My parents, undaunted by my persistence in school choice, willingly sent me on my way (okay, not so willingly when it came to saying goodbye, but that I’m guessing is a normative going-off-to-college right of passage). I found friends who saw beyond my disease, who have laughed with me, brought me extra clothes in the hospital, met my doctors, and made cupcakes in my kitchen. I have done community service and had a job serving under-resourced preschools all four years. I have been doing research since freshman year, did a senior thesis and got a grant, and am being awarded a Psychology Research award at graduation. I’m graduating with honors. I have perfected my Patrick Dempsey addiction, finally understood how to use Tumblr, hiked Machu Picchu, ran a half-marathon, and never pulled an all-nighter. And just before graduating and really entering the ‘real’ world (whatever that actually means), I even went on a first date – make that second, compliments of vegan ice cream.

The point to the rambling – I went to college. I went to college with Crohn’s. I went to college and was sick. I went to college and had surgeries. But, I went to college. I went to college and did it in four years and am graduating. I did it. I did not do it alone, but I did it. And so can you or your child or your best friend or that new patient you had in clinic today who was frightened and sick.

As an English minor, I took a class this semester that centered around literary non-fiction. The final class project was to write an essay of our own – mine was a braided essay about the history of Crohn’s (look it up, the story is fascinating!) and my own personal experiences. I even interviewed my GI for the piece. After being undecided about the title for literally weeks on end, my roommates finally prompted me to accept the working title of ‘Not Where I Thought I Would Be’ – and they, as usual, were right. At one part in the piece, I wrote that my GI understands that even though I may be broken, I am not breakable. I sent him the essay, which he so kindly read, and sent me an email response. “I would dispute one thing,” he wrote. “You are not broken. You are whole.” And while the thought was enough to leave a permanent grin on my face and make me feel incredibly lucky and honored to have such a compassionate doctor, it made me think – he’s right. I am whole.

In pediatric chronic illness, the focus is often on what’s broken. Your ESR is too high, you don’t like taking injections, you miss school to see the doctor, band-aids dot your arms to remind you where blood was taken. There are pictures of your gut, all twisted and inflamed, the pharmacist knows you by name, your medical chart has several volumes. But we forget to remind ourselves of something really important – we’re still kids, we’re still growing, we’re still dreaming. Our bodies may be in need of support, but our souls and spirits and whole. Be it going to college or anything else, having a chronic illness is only part of the equation.

If the last few weeks have proved anything to me, it’s that life is always happening – even if it means my college graduation will be here sooner than I want. There are still so many firsts in store for me, so many exciting things ahead, and yes, enough challenges (both health-related and other) to keep me busy. Perhaps it’s not where I thought I would be, but to be honest, I’m pretty darn happy I ended up right where I belonged.

Jennie

A Brief Interlude – And an Alcatraz Bathroom

Posted on 22 April 2013 by nocolon33

Sounds like the opening of a joke, doesn’t it?

It’s not. I’m going to start with a brief interlude in which I brag about my kids. I will end with the tale of a bathroom.

Tinkerbell, Jedediah and Elly Mae each have some talent. Tink and Elly Mae each dance. Jedediah woke up one morning and wanted to act, and he’s got some chops.

Sela and I, together, have five left feet. The only person I know who has a voice worse than Sela does is me. So where they get this talent, we don’t know.

In the last week, we’ve been to a recital for Elly Mae’s dance team, an awards banquet for Tink’s dance team and several performances of Jed’s play.

Sela and I are extremely proud of each of them. They selected activities that were important to them, and they worked HARD and practiced. A lot. There are few things that have given me as much joy as a parent as seeing them get excited about an activity that they chose, as opposed to the requisite soccer, etc. that every kid is forced to try.

We’ll talk about Tinkerbell’s foray into horseback riding in some post in the future. No idea what that was all about.

As Buzz once said (and I’m paraphrasing), “To the bathroom, AND BEYOND!”

Jed’s play was at the Junior High School. Which is convenient because Jed’s a junior high student.

Being at the Junior High School necessitates going to the bathroom in a junior high school bathroom.

With me so far?

It shouldn’t surprise you to learn that boy’s junior high school bathrooms smell like junior high school boys. So I was put in a foul humor upon entering.

I’m also fairly convinced that the first casualty of school budget cuts was functional toilet paper. This stuff was the worst of the industrial bad. Wow. It was so bad that my butt audibly complained. Seriously.

Despite all of that, the worst part was the sink design. Picture this. Two side-by-side sinks. Not a problem. Where were the soap and paper towel dispensers? To the left of the sink on the left, of course. You couldn’t get to them from the sink on the right. You might as well have had one sink since only one was usable at one time.

Don’t give me any complaints about space constraints. There were options. A myriad of options. Between the sinks for the soap dispenser? Anyone? Anyone?

At least I only had to use the thing a few times. Jed’s gotta use it all the time.

I’ve Had It Up to Here

Posted on 7 February 2013 by jendavid91

I returned home on Tuesday evening, dropped my bag on the floor, sighed, and looked at the pile of clothes still sitting on a table beside my desk and thought, ‘Thanks for the reminder.’ I had been looking forward to attending a great IBD meeting in Montreal this past weekend – planning to, but in the end my unruly body decided that traveling was not a good idea. Consequently, I missed the conference, my friends, and had left the pile of clothes atop that table and spent the past near-week in the hospital.

I find that when I’m hospitalized, for the first few days with the nausea and upchucking and pain meds and exhaustion, I’m relatively okay with being in the hospital. Relatively. But then I reach a point, a threshold level, when I’m feeling okay enough or frustrated enough or just as though I’ve had enough and feel the inescapable need to devise my exit strategy.

Crawling into my own bed last night, I felt as though I simultaneously belonged nowhere and everywhere. There’s an ease in being transposed in hospital, academic, or home situations that is comforting but alarming. The same habits flood back to me – using my medical lingo (“No an 18 French is not acceptable, please get a 10 French, and I’ll be putting in the NG tube myself, thank you very much”), putting my disease history in chronological order (deciding, as doctors have taught me, what is relevant and what is ‘personal’), reciting my IV speech (“I’m a hard stick, go a little higher or a little lower, but try wherever you think you can get it”), and explaining my ever-faithful teddy bear companion (yes, even at 21 years old). It’s routine. But it’s also disorienting, a feeling that leaves me awake at night, blinking at the ceiling, wondering when the bruises on my arms will fade and knowing that the ones on my spirit may never quite heal. This is not intended to sound fatalistic or depressive, just honest, a feeling that sucks me back to a fetal position regardless of the 9 years of IBD, until I feel like a little girl just wanting to be hugged.

A friend, who was at the conference that I missed, was texting me today and asked me how I was doing. Throughout our conversation, he asked me if I was taking it easy and taking care of myself. I replied that I think we both do a much better job of taking care of others than taking care of ourselves. I’m the first one to hold someone’s hand, to hug them, to offer company to the hospital or an equally difficult/upsetting task, yet the last one to ask for my hair to be held back as I vomit. And luckily for me, I have friends who do not ask (because they know I’ll politely decline) and help me out anyway and I love them for it.

Similar to my reaction to the over-sized NG tube, sometimes that tantrum of “It’s just NOT FAIR” bubbles to the surface. And that’s okay, even if it feels like something I should’ve gotten over. When I’ve had it up to here, near-tears and all, the comfort of having people who ‘get it’ is immensely helpful. I don’t have to explain myself to them, and it makes me really believe that there will be more conferences, more opportunities, despite the pain and frustration that accompanies any chronic illness.

My only advice when it comes to ‘having-it-up-to-here-moments’: eat a cupcake (if tolerable), stare at a picture of PDemps for a while, listen to a favorite song, dig up your old yearbook and reread notes that make your heart warm, hug someone, and remember that there are always people in the wings waiting to catch you.

Jennie

Parental Guidance

Posted on 30 October 2012 by 2endibd

Having a child with IBD means many things. It means learning a new language, a new way of living, developing new family dynamics, gaining a new perspective, and seeking, desperately, to get guidance (and to give guidance). Also, it reinforces the notion, “You don’t know what you don’t know.” But, luckily at my child’s care center, and across the ImproveCareNow Network in which our care center is a participating member, guidance is available to parents and guidance is also sought from parents.

As I watch my child learn to live with Ulcerative Colitis, I learn too. So, not only does my parental guidance come from her medical team and other parents, it comes from my child as well. She guides me by letting me know I am being overprotective or questioning too much – how did you feel today? what was your level of stomach pain? how many times did you go to the bathroom? – and that sometimes it is best to just leave the UC inquisition for another day. When she is feeling good, she just wants to relish the moment and forget about UC. She guides me to live in the moment as she has learned to do and to appreciate the gift of now.

Parents as partners and teachers is important to a child’s medical team. Parental guidance is a must when communicating a child’s flare pattern as it is as unique as are our children. My daughter’s care team relies on me and my husband to guide them through her symptoms and health pattern so they can care for her better and deliver better outcomes. It cannot be “family-centered” care without the family participating as partners in a child’s care. Doctors cannot provide the best care for IBD kids without parental guidance.

As my child is a tween, my parental guidance to her during a medical visit is to model clear communications with her medical team. When my children were very young, I would always say before a doctor’s visit, “Doctors are like detectives, and we have to give them the clues to help them solve the mystery.” Teaching our children how to communicate with doctors is a necessity. With her teen years fast approaching and college around the corner (in my mind anyway), I must use my parental guidance to prepare my daughter for life-long medical care without me. I must model the behavior she needs to learn to do life with UC on her own, someday.

Even though my daughter is only a tween, her transition to being able to care for herself must begin now. While I want to be by her side through her IBD journey forever, the reality is I cannot do that. So I must not fail her by not preparing her or guiding her toward this kind of independence. We are very fortunate, our care center has a formal transition program from pediatric to adult GI care. It is just this type of guidance that I need to receive from them to do this right.

ImproveCareNow (ICN) made transitions a focus at their recent Learning Session in Chicago. Young adult patients, medical professionals and parents came together to bring their perspectives, provide their guidance for the many transitions children with IBD face and how to navigate them as smoothly as possible. Across the ICN Network, parental guidance is not only needed, it is valued. The ICN Parent Working Group (PWG) is proof of that – parents from ICN centers are coming together to guide one another and the ICN Network.

When a child is diagnosed with IBD, or any chronic disease, parental guidance is important. Why? Because family-centered care requires a circle of communication and guidance from all involved at different points on the journey. It is the needed model to resolve the issues and meet challenges of pediatric IBD. Without the many facets of “parental guidance”, our children will not live as well as they should with IBD. So not only is parental guidance important, I believe it is required.

Population Management Drives Improvement at University of Michigan

Posted on 18 October 2012 by ImproveCareNow

The ImproveCareNow Quality Improvement (QI) Team at the University of Michigan has been working very hard at improving their QI processes. They now have had a long trend of improving remission rates from one population management report (PMR) to the next. But like any good researcher, they had to ask themselves: is this a real improvement in disease status for our patients, or an artifact of better data?

Physician Leader Dr. Jeremy Adler thought that major contributors to improved remission rates over the past year include: 1) improved processes with more complete data collection, 2) educating clinicians who misunderstood the methodology and consistently misclassified visits, and 3) new and improved PMR process, in that order.

Dr. Adler’s team began digging through their data, and leaned a few things. In the interest of helping others in the ImproveCareNow Network – which is what collaborative medicine is all about - the Michigan team shared what they learned from analyzing their data.

Here is what the Michigan Team learned – in Dr. Adler’s words:

1. We are still collecting data on paper forms (we just went live with EPIC). We had a high rate of visits with missed data capture. So many of the data points were old. We made many attempts to improve return rates of data forms, which eventually improved our data collection rates. We also have had several changes in our forms designed to help highlight questions that were frequently missed.

So I went through our pre-visit planning (PVP) forms to manually calculate remission rates from the column “PGA Remission Status” (# patients in remission / # total patients). I then went through Excel to exclude the data points where the data were >200 days old.

On the enclosed graph, the red line represents the original remission rate from the PMR. The blue line represents remission rates with data >200 days old excluded. I was surprised to see that there is very little difference. I suspect that this means that when we miss data collection, we miss it for everyone, not just sick patients.

2. I then learned that a provider had a misunderstanding of the Physician Global Assessment (PGA), and was routinely classifying based on overall disease course, rather than disease activity at the time of the visit. I then went into excel to exclude all the data from that provider (green line). Again the remission rates did not change substantially.

3. This leads me to believe that our improvement in remission rates may be true improvements in disease status. The improvement in remission rates starting in April-May coincides with when we began routinely having population management meetings, and routinely acting on our findings.